Supporting children of transplant patients

A new collection of activity books for children of transplant patients has been launched by a transplant coordinator at Harefield Hospital.

Jola Kwinta saw that a number of children of heart and lung transplant patients were struggling to understand why their parent was in hospital. Many were also experiencing stress and anxiety while their parent was away and even when they were eventually discharged following a transplant operation.

Jola said: “We are very good at focusing on the acute needs of our patients, but I felt more could be done to provide support for their family members, and particularly their children.

“I thought that we were really missing a trick there. If we could relieve some of the stress from the children, it would in turn relieve some of the stress from the parent and allow them to focus on preparing for and recovering from their transplant.”

The two books, ‘Big Bear’s New Lungs’ and ‘Big Dog’s New Heart’, were the result of three years of work in Jola’s spare time with the not-for-profit publisher Get Better Books.

They follow Big Bear and Big Dog as they prepare for and recover from receiving transplants, and cover topics including what equipment the characters see in hospital, what different jobs people have in the hospital, and how the characters can stay healthy when they go home.

Jola said: “I want to make these books available for every child of every transplant patient at Harefield. I really think they will make a difference and I hope that children will keep and cherish the books long after their parent has left hospital to help them make sense of their emotions in the future.”

In addition to the book, children will be given a bookbag, multicoloured pens and crocheted figurines which have been individually handmade by Jola.

One of the early recipients of ‘Big Dog’s New Heart’ is transplant patient Paul Churchley and his eight-year-old daughter Chloe.

Paul, a 41-year-old bespoke carpenter from Plymouth, received a heart transplant at Harefield in November 2022 after going into heart failure earlier that summer. While in hospital, in between learning to play the ukulele, Paul spent time with Jola giving feedback on early editions of the activity books.

Paul said: “Of my three children, my youngest Chloe was the most vocal about missing me while I was in hospital, and my wife and I found it quite difficult to explain to her what was going on. Even after I had my transplant and went home, she was anxious any time I had to go back to Harefield for check ups because she thought I was never going to come home again.

“Chloe’s new book has been incredibly useful for her now. She has loved colouring in the different characters and has even taken it with her to school for ‘show and tell’ to explain to the other children what has been happening with her dad. It is a great relief for me that she has been able to make sense of this very traumatic period for our family and connect with her feelings.

“I have to admit, even I have learnt things about my transplant thanks to the book!”